I knew the staff at my pulmonologist’s office used pulse oximeters and it showed some pretty interesting stuff at one point, so I wondered if I needed one. I know now—but I wish I knew before I bought one—how dangerous they can be.

A newly diagnosed alpha-1 antitrypsin deficiency (AATD) patient needs to be poised to learn and not allow themselves to get overwhelmed. But the doctor can help by being confident and positive while giving them the news and treatment they need.

Lately, I get lightheaded and request breaks when the nurse does a 6-minute walk at my pulmonologist’s office. When I started showing some lower numbers on my yearly pulmonary function tests (PFTs), the doctor ordered the walks more frequently. The nurse who was monitoring a walk recently stated my numbers were dipping pretty low as I was walking and seemed concerned.

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There are some patients who are so confident and bold that they know what questions to ask their doctor when their test results come back abnormal. It may seem like we are all like that to any doctor after getting complaints and questions left and right. Some of us, however, like to do our homework first before asking any such questions.

Read more about therapies for AATD

We may freak out when our healthcare professionals get concerned about us because no doctor has ever seemed that concerned about our health. So what bold questions did I ask the doctor then? Like any smart, courageous person, I went right out to a local grocery store and bought a pulse oximeter, and took it home to monitor my numbers.

What I discovered is that these small machines could not tell me much, so my best bet was getting that info from my doctor and his tests. I learned that if my blood pressure wasn’t high enough, I couldn’t rely on the numbers on the screen. I also learned that even things like body temperature can affect the results.

There are, of course, good things about having them if a person has lung issues. Used with education, these tools can really help them in hard times. AATD patients with needs for extra oxygen, sleep apnea, or a heart condition, rare as it may be, can also benefit from a tool like this if they know how the machine works.

I do keep my little pulse oximeter around for emergencies and for when I have low energy to try to pinpoint what’s wrong. I can use it to find my baseline and then monitor my results when I am hydrated and warm. It also monitors heart rate, which can be handy because my pulse can be elusive.

I think most of the time I can get distracted by the information showing up on the screen. I usually end up finding out that my bad numbers are a result of low blood pressure or dehydration. Overall, even good numbers may give a false sense of hope if the patient’s body is working too hard to keep oxygen saturation up.

Of course, as I dived into the oxygen saturation world, I learned it is very complex there. This information is very important to a doctor or a knowledgeable patient. It just wasn’t very helpful to me.

Neither does a doctor need to discourage the idea of buying one’s own pulse oximeter. It’s like telling a child not to touch fire. In time, you can rest assured, they will try it.

This may seem like common sense to you if you’re a seasoned pulmonologist or other healthcare worker and know what to say and what not to say in these types of situations.

I learned the hard way that there is such a thing as too much information, so for some, any education on pulse oximeters won’t be helpful. Patients need to have individual attention when it comes to knowing things that will inevitably confuse them before helping them, especially when they have a rare condition like AATD.

A previous column I wrote underscored how essential support groups can be for patients of rare diseases. One support group person really helped me as I was complaining about what my body does when I exert myself. She said her husband has the same problem and has been doing exercise anyway and they think it saved his life.

When a person realizes they have the tools they need, it makes a difference. I was lost on the issue of oxygen saturation before I found hope from a person I have never met. Now I walk with a bit more confidence.